“We need to stick together”: Meet the family made up of Ongwen’s ex-wives

BY JOHN OKOT

JUNE 15, 2021

After escaping the LRA, the former “wives” of the convicted war criminal were shunned by their families. So they decided to be their own.

Dilis Abang, Evelyn Aromorach, Agnes Aber and Scovia Achan were all forced to be notorious Lord’s Resistance Army commander Dominic Ongwen’s “wives”. Credit: John Okot.

When Dilis Abang escaped from the Lord’s Resistance Army (LRA) in 2014, she was initially overcome with relief. After being held captive for ten years by the notorious rebel group, she found her way home in northern Uganda. When she hugged her mother for the first time in a decade, the tears flowed freely. “I felt safe in her hands for the first time”, she remembers.

Abang had just escaped untold trauma. As an LRA abductee, she had been forced to “marry” a rebel soldier called Dominic Ongwen. She had three children by the now infamous commander who was recently sentenced to 25 years for war crimes and crimes against humanity by the International Criminal Court (ICC).

Abang was overjoyed to be free, but the feeling did not last long. One night as she slept alongside her children, she woke to the sound of heavy footsteps. Locals had surrounded her grass-thatched hut. They set fire to it and shouted expletives.

“At first I thought I was dreaming,” says Abang. “I began choking because the house was full of smoke. I opened the door very fast to save my children and ran away”.

Eveyln’s story

Ten years earlier, Evelyn Aromorach had lived through a very similar set of events. She was abducted in 1996 by Ongwen himself. She was just 13 years old and was in the northern town of Patiko when the LRA fighter grabbed her arm.

“I told Ongwen that I was going to inform my uncle that there was a sick person at our home, but he ordered that ‘you won’t go anywhere…from now on you will be part of us’”, she recalls.

Ongwen raped her and made Aromorach his “wife”. She was an LRA captive for the next nine years until, one day, government soldiers ambushed the rebels in Pabwo village. In the attack, she was separated from her baby by a bomb blast. Amazingly, a few days later, she heard on the radio that an LRA escapee had identified the child who was then returned to Aromorach’s mother. After pleading with Ongwen, who contacted LRA leader Joseph Kony by walkie-talkie, Aromorach was released.

Her family were delighted to see her. But like Abang, her welcome did not last long. A few days later, she was given an ultimatum. “My relatives said I had two weeks to look for place to stay because our family land was not enough for ‘bush people’”, she says.

Almost a decade after the first time, Aromorach left her home against her will for a second time, this time with her three children in tow.

Meeting the family

In the course of the LRA’s two-decade insurgency in northern Uganda, the rebel group is estimated to have abducted around 30,000 children. They have typically been used as child soldiers or sex slaves. Ongwen himself was first captured when he was just nine years old.

Many of these abductees eventually escaped or were released but, like Abang and Aromorach, have been revictimised by their communities. Former LRA captives have faced a wide array of mental health problems as well as economic difficulties after leaving the rebel group.

This was Aromorach’s experience after fleeing her home for the second time. For years, she did odd jobs to survive, feeling abandoned and alone. Then, in 2019, she heard that a local NGO in Gulu city was training former LRA abductees in vocational skills. She enrolled.

That’s where she met Abang. For the first time, Ongwen’s two former “wives” could share their experiences of abduction, trauma and rejection by their own families with someone who understood exactly. “It was like meeting your little sister,” says Aromorach.

They soon became friends and began looking for others they had known in captivity. They found Agnes Aber, 32, who had held by the LRA from 2000 to 2010 and had three children by Ongwen. She too had been driven out by her community after finding her way back.

“When I returned home, I found out that my father had passed away,” recalls Aber. “His co-wives were bitter with me when they heard that my half-sister died in captivity. Then they began accusing me of killing her.”

Next, the women discovered Scovia Achan, 30. She had been an LRA captive from 2002 to 2015 and also had three children with Ongwen.

The four former “wives” of the LRA commander got to know each other well and helped each other through their difficulties. They found such comfort in each other that they decided to live together and began renting a tin-roofed house on the outskirts of Gulu. Having felt shunned and misunderstood for so long, including by the communities they expected to welcome them back with open arms, the women were finally part of a supportive family.

“These days I don’t worry much,” says Achan. “My mind is settled and I now have people who understand me well because they went through the same experience that I did.”

“Now I am happy,” adds Aber. “If one of us has a problem, we deal with it collectively as a family.”

Getting by

As students, the women receive a small allowance of 50,000 Ugandan shillings ($14) per month. They sew and wash clothes and do gardening work for others to earn some extra income.

With this they just about get by, but they are also appealing to the ICC to compensate them as war victims. Yet despite their clearly traumatic experiences, the process is not necessarily straightforward.

The ICC’s Trust Funds for Victims (TFV) has said it will pay reparations to those who suffered under Ongwen’s command between 2002 and 2005 in four locations: Lukodi, Pajule, Odek and Abok. Yet only one of Ongwen’s ex-wives – Aber from Pajule – is from one of these locations.

An ICC spokesperson, however, told journalists in April that the location limits will not apply to certain atrocities such as sexual crimes. And Maria Kamara Mabinty, Outreach Coordinator for Kenya and Uganda, explained that the ICC “has issued a seven-page document indicating how reparation may take place – mapping and engaging the victims on what they [should] expect from their outcome from the Appeals Chambers”.

This, however, is all assuming Ongwen’s guilty verdict isn’t overturned. The former LRA commander’s lead defence lawyer, Krispus Ayena, recently told African Arguments that his team has filed an appeal. “There are so many grey areas on why the High Court should look at the evidence afresh. If we could manage those technical legal matters which we think we are washed away, perhaps the case could collapse all together,” he said.

“This is our life now”

After decades of trauma, Ongwen’s four “ex-wives” are looking for compensation and institutional recognition in what can be a complex and difficult to navigate system.

No amount of organisational support, however, will replicate the immense emotional support they can provide each other. Having long felt deeply alone and rejected, they have found solace in each other’s company. They still face significant economic and social challenges, but for the first time in years, they are beginning to look to the future.

“This is our life now,” says Aromorach. “Once we save enough we want to buy land where we can stay with our children…We need to stick together and look out for each other as one big family”.

 

South Africa unrest: We are not a failed state, but a failed global system

BY JESS AUERBACH

JULY 15, 2021

South Africa encapsulates global inequalities – and the kinds of tumult we’ll see more and more of worldwide – inside national borders.

A township in Johannesburg, South Africa. Credit: Patrik M. Loeff.

South Africa is in a tough spot at the moment and it’s frightening to see a system that already feels so fragile begin to implode. Over the past week, we’ve witnessed plunder and the destruction of property on a scale not experienced before. These actions were supposedly triggered by protests following the imprisonment of former president Jacob Zuma, but there remain many unanswered questions as to what was at play to ignite the fuse.

This is the reality of living in a country that encapsulates global inequalities inside national borders. What we see here has relevance and resonance far beyond our own shores.

Inequality in South Africa is amongst the highest in the world. So is unemployment, especially for those under 25. This is the same generation of people who see through their cellphones everything they cannot have and will likely never have but has been promised of the post-apartheid world. But of course we are not post-apartheid in a global sense, and even locally it is far more complicated.

South Africa is reeling from COVID-19. In the middle of a very cold winter, we are also in our third wave. Almost all of us have lost friends and loved ones to the virus, while many jobs have been temporarily or permanently removed from the employment ecosystem. Millions of our citizens fed their families on social security grants. Initially a special Covid-19 grant was provided that gave R350/month ($24) to all those with no other income. Stretched over a month, that is well below the international poverty line and on the absolute brink of physical survival, and the support was not extended after April, just when the third wave began to hit.

Wealthier countries have managed to vaccinate, but we are only just beginning in earnest, so many people are sick, frightened, hungry, and despairing, and rightly so because from here the future does look very bleak. On a collapsing planet, what is our place? Faced with the advances of technology and ever-shortening global supply chains which are rapidly transforming production systems, how will we ever create the necessary jobs? How will we sustain lives and livelihoods at scale and in a way that recognises the unique right of each person to self-determination?

We are at a breaking point across the board, and though the acts of looting and wanton destruction we have seen are utterly horrifying, it does not take too great a leap of imagination and compassion to understand them. More and more, as a planet, this is what we will be facing in the coming years.

Most readers outside South Africa will see the videos of looting and violence and the military coming in to respond. You will see the mob at its worst and the country on its knees, and you will grieve Mandela’s dream. What I ask you to remember is that all stories are nuanced, and here too, there are many sides to the narrative. All around the country, people have come together to protect what they value, and they will do so more and more in the coming days in remarkable deference to democracy and the public good.

The taxi industry, which is often at the heart of social unrest, has stood on the side of public protection and explicitly called for the protection of both lives and livelihoods. Businesses, government, civil society and community organisations are working together closely and will work together more. Thousands of people have already cleaned up the destruction that others have wrought.

In some communities, looters have been made to return the goods by local leadership. In others, food has been kept but everything else taken back. In every household, decisions are being made: to join in, to respond with rage and fear, or to find the best of ourselves and to act with the humanity that also defines this nation.

We have seen the worst of who we are, but in the coming weeks, we will also see the best. Kindness does not lend itself to viral videos and international headlines, but if it weren’t for that care and the million micro-kindnesses that are also being enacted, we would suffer so much more. We hope our political leadership rises to the challenge and guides us through – we trust that they will, but they might not, and we could become a little more broken than we already are.

Living in a suburb of Cape Town gives one a particularly curious perspective on South Africa. It is both the same and very different to living abroad: the same because the level of privilege and personal bodily comfort is roughly equivalent, and different because unlike those who have national borders between them, there are only a few blocks between those who have full fridges and those who have no fridges at all.

But this is how capitalism works in the world, and until we come up with new systems of distribution at a global scale it is what we must live through with frankness and a recognition of what is at stake. The lenses go in all directions: everyone can see both ways, and poor countries cannot accept rich countries’ behaviour any more than poor South Africans can accept a system that benefits some at the expense of the many. COVID-19 has simply thrown this into stark relief.

Can we overcome the crisis of imagination that has meant most of us accept what is, or can we use this as an opportunity to think freshly about what the world should actually be? We in South Africa have been through these moments before. As before, we will get through. My hope is that those far away at least try to see the nuance in the narrative: we are not a failed state, but a failed global system – South Africa just clarifies what is actually going on.

 

What does it mean to decolonise BDSM? 

BY THANDIWE NTSHINGA

MAY 21, 2021

“It’s not about race, it’s about slavery”

Credit: Warm Orange / Unsplash

One afternoon in 2018, while standing with my forehead against the wall of my bedroom in Johannesburg, arms above my head, legs sprawled apart, and wearing only a pair of black panties. With my consent, Sunga Konji, an exquisite Zimbabwean rope practitioner, flogged my back. 

I expected to feel the pleasure of pain. But instead, I suddenly felt like we were playing out a scene in a movie where I was a cotton-picking slave and he was my owner. It did not feel good. I stayed quiet in the moment, confused by why I felt this way and why notions of coloniality had risen even though we are both Black.

Konji and I discussed it in our after-care session, but several years later, I have noticed that similar conversations are rarely had more widely. There have been recent efforts to increase Black representation in kink – pushing back against notions that it is “ungodly” or the preserve of white people – but few discussions of coloniality despite its prominence in the scene through ideas of “masters” and “slaves”, shackles and chains.

To begin having these conversations, I spoke again to Konji and with Black feminist sexual wellness practitioner Mamello Sejake. 

Being kinky without a power system

Konji has been living in Cape Town for over a decade. Over the years, in South Africa’s predominantly white kink space, he has often observed Blackness being fetishised in uncomfortable or offensive ways. He once attended an event that featured a “slave auction” in which submissives were sold to the highest bidders. He was told that the performance was “not about race, it’s just about slavery”. 

Konji says that he works hard to propel a pro-African stance, making him intolerant to “weird racial things”. With his white clients, if need be, conversations on racial dynamics are had. Further engagement is discontinued if he deems their behaviour unacceptable. However, he believes that to decolonise the scene in South Africa requires diversity- in representation as well as conversation. An example of this has been a more recent practice of replacing the master/slave and dominant/submissive frameworks with new ones. Konji believes that these typically used concepts, in which one person owns or controls another, are focused on power systems and are not necessary in kink.

In his work, he instead presents himself as someone who facilitates needs and desires. 

“You can be kinky and still enjoy a good time without needing a power system to exist,” he told African Arguments. 

“Kink supersedes race and geography”

When I spoke to Sejake about coloniality in kink, she saw matters quite differently. She too has frequently come across the master/slave trope and the use of implements often associated with slavery. She shared a story of not enjoying engaging in play with a Black womxn that involved a stockade. However, that was not because it triggered notions of coloniality. To her, it was merely a moment in play that was intriguing but ended up not being as pleasurable as she had initially imagined. Sejake does not see the frameworks and toys typically used in kink as inherently problematic. 

“We play with chains and whips, right? Some of the toys that we play with have been used in very violent ways,” Sejake said. “[But] everything is given power and meaning if we give it. Within kink you get to play around with that power. You get to diffuse it.”  

For her, a bigger problem in kink is that it is often narrowly understood in Eurocentric and heteronormative ways as opposed to a more nuanced understanding of kink as centred around human yearning and enjoyment. She argues that the scene should be making more room for African traditions and customs. Sejake offers the example of labia stretching, which is particularly prevalent in Rwanda and Uganda but practised in several eastern and southern African countries. The custom increases sexual pleasure and facilitates orgasms and female ejaculation, but is sometimes referred to as “mutilation” in the West. Sejake believes our understanding of kink should be expanded to include African practices such as these. 

“Kink supersedes race and geography. It comes with human nature to explore, desire and play. The only difference is in the ‘how’,” she said. 

“Benefit to working with someone who is white”

My conversations with Konji and Sejake demonstrated how differently people understand kink and the role of coloniality in it. These differences highlighted even more clearly both practitioners’ emphasis on the importance of communication and empathy.

Sejake referred to kink as “care work” that involves “compassion and understanding and not just sensation work”. Konji even went as far as to suggest that the space created by kink can be the perfect forum to wider difficult interracial dynamics. “If you are someone who is tired of having to deal with this racial shit every single day in South Africa, I would see the benefit to working with someone who is white,” he said.

Early last year, I did just that. I began a kink relationship with a white man in which we openly discussed class, race, and power. In doing so, we decided to discard the dominant/submissive label after an innocent reference to ownership by him made me cringe. I identified as a “switch leaning towards submission who enjoyed being pleasured”, while he identified as a “submissive who enjoyed pleasuring”. He facilitated my needs, desires, and pleasures by tying me with rope, handcuffing and blindfolding me, and spanking me. 

I cannot say that this relationship has helped me navigate racial dynamics outside of the space we created, but the way in which we both practiced empathy – which is rare, especially among heterosexual white men, no matter how “woke” they are – has helped me develop an even deeper and more nuanced conception of the complexities of what kink can be. 

 

Where we belong: Inside the reckoning for queer rights in Namibia

BY CHRIS DE BEER-PROCTER

AUGUST 5, 2021

Meet some of the activists fighting to live and love in Namibia.

From left to right: Daniel Digashu, Johann Potgieter, Anita Seiler-Lilles and Anette Seiler, with Daniel and Johann’s son Lucas in front. All photographs by Chris de Beer-Procter.

This year, a growing rumble of LGBTQ rights activism in Namibia has escalated into an impressive array of legal actions. In 2021 alone, there have been at least ten cases brought to the country’s courts by same-sex couples seeking marriage equality, trans activists and victims of homophobic violence, and queer families fighting for their rights to live together. This year too, the cabinet considered abolishing Namibia’s “sodomy” law, a seldom enforced colonial-era provision that criminalises sex between men.

These developments could be monumental for a country in which state-sanctioned homophobia has continued since its hard-won independence in 1990. Despite the liberation movement turned ruling party SWAPO promising equality for all, Namibia’s recent political history is littered with homophobic comments by prominent politicians and LGBTQ Namibians do not enjoy full legal rights. They are not protected from discrimination, they do not have the right to marry, and their marriages in other countries are not recognised. Some popular responses to recent legal cases also highlight the extent to which homophobia is still common in much of society.

It is this status quo that the Namibians are challenging in the courts and through other interventions. Here are some of those activists, sharing their experiences of fighting for queer rights in their own words.

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“When we opened the case, we had no idea it was so much bigger than us.”

South African Daniel Digashu (left) and his Namibian husband Johann Potgieter (right) are suing the government to have their marriage, convened in South Africa, recognised by the state in Namibia. After years of waiting, their landmark case was heard on 19 May 2021. They await the judgement. As told by Daniel:

“We decided to move to Johann’s homeland so that we could spend time with his family, we wanted our kid to know his side of the family, his grandparents. When we initially spoke to officials at the Ministry of Home Affairs, we were told not to open pandora’s box by applying for permanent residence because our marriage is not recognised. Instead, we applied for my work permit so that I could at least run the company I own with Johann.

When the work permit was rejected, we were so frustrated because we went to them, we put our cards on the table. We were transparent. When our appeal was also rejected, we didn’t really have a choice but to sue. We had uprooted our lives, our home, our son, our dogs. Our kid was already in school. We didn’t have a choice. Whether they believe it or not, we are a family unit. I was not just going to go back to RSA because they rejected my visa.

When we opened the case, we had no idea that it was so much bigger than just us. Personally, my two boys are just such rocks. I couldn’t have stayed this long had it not been for them. That keeps me going, that and knowing how many more people are fighting for exactly what we’re fighting for.”

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“We….are normal people who fall in love with people from our own sex. That is the only difference”

Anette Seiler (left), who is Namibian, and Anita Seiler-Lilles (right), who is German, planned to relocate and retire in Annette’s homeland. Although she fulfils all criteria in the Immigration Act, the Ministry of Home Affairs and Immigration rejected Anita’s application for permanent residence because it does not recognise their German same-sex marriage. As told by Anette:

“There are honestly so many more interesting activities we imagined pursuing in our retirement, rather than being in court fighting the Ministry of Home Affairs and Immigration. On the one hand, we feel that we are in the right. But, on the other hand, we fear that the judges might decide against us. It’s not a sure win. For example, when we have spoken to government employees about our case, they openly trampled on our dignity. It’s incredibly distressing. We have a lot to lose.

We are not only fighting for Anita’s right to live in Namibia. Should we lose, we must both leave Namibia. I am a Namibian, who then would have to live in exile just because I love a woman.

Every time we get an invoice from our lawyer, we are shocked. This case is so expensive, we hope we have enough money to fight until the end. This money is our life savings. We planned on saving it for our retirement and for our travels, not for legal fees.

We, the gays and lesbians living in Namibia, are normal people who fall in love with people from our own sex. That is the only difference to heterosexuals. In every other sense we are like all other people. We laugh, we cry, we work and eat and sleep. Sometimes we are sad, sometimes we are happy. We are creative and interested in many things. Most of the time our sexuality is not even in the forefront of our minds.

In the coat of arms of Namibia, it says ‘Unity. Liberty. Justice’. But, as long as there is no liberty for gays and lesbians to be who they are, as long as there is no justice for us because of our sexuality, there will be no unity.”

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“It’s hard to have your existence marginalised, to be told that you don’t belong.”

Omar van Reenen is a co-founder of Namibia Equal Rights Movement and a civil rights activist.

“What I do is inspired by my grandfather. He built the first hotel for coloured [people] in Namibia, during apartheid. It was a place of activism, community, a safe space. I grew up with that story and I felt like the universe sent me here to fight for social justice in the same way that my grandfather did.

Like racial justice was the civil rights issue of my parent’s generation, LGBTQ rights is the civil rights issue of our time. And it’s disheartening to see that the government doesn’t take this issue seriously.

It’s hard to see the government misusing my constitution to invalidate my human dignity. It’s hard to have your existence marginalised, to be told that you don’t belong. It’s hard to be called sick, demonic, satanic. It’s hard that you can’t walk up to a business and say ‘listen, I’ve got a bright future ahead of me, please hire me’ knowing that if they find out who you are, they might ostracise you. It’s hard not to be able to walk into a healthcare centre without fearing discrimination. It’s hard knowing that I can’t marry the person that I love in my country because there’s no recognition of my love.

It’s hard to talk about my personal stuff because I always try to put other people first. But I will say that it does take a mental toll because you don’t only have to stand up and fight against an oppressive regime, there’s a lot of internalised homophobia in our communities. It’s exhausting going to bed at night, fighting this fight but it’s a good exhaustion. It’s good to feel tired fighting for social justice, because fighting for what’s right, is always worth it. I wake up the next day and I think ‘new day, new fight’.”

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“I always imagined activists to be angry people with posters”

Mercedez von Cloete is a media personality and human rights advocate who is suing the Ministry of Safety and Security for transphobic violence she suffered at the hands of police in 2017. The trial hearing concluded on 16 May 2021. She is awaiting the verdict.

“A few years ago, I had a very traumatic experience with the Namibian Police, where I was unlawfully detained and brutally assaulted, repeatedly. This was not the first time that something like this had happened to me, but I promised myself that I could not allow it to persist. And so, for the last four and a half years I’ve been trying to get justice and hold the police accountable.

I always imagined activists to be angry people with posters, shouting and protesting on the streets. As someone who is in no way confrontational, it didn’t look anything like me. I’ve since learned that leaving injustices unchecked is an injustice in and of itself. That’s what made me realise that activists are really just people who no longer accept the things they ‘cannot change’ but instead seek to change the things they cannot accept.

Just like how we need the intelligence and courage to look past complexion and see the community to eliminate racism, I feel we need to look past gender and genitalia or who and how we love to live in a just, accepting and equal society.

I now consider myself an advocate for change, for all the trans and gender diverse people who don’t have the agency or support to ensure their rights are upheld. Or who are denied certain fundamental services, rights, protections and freedoms because of who they are. For those who experience continual harassment and police brutality, something which has remained unaddressed for far too long.

Personally, the emotional, psychological and physiological (dis)stress cannot be quantified. I’m still healing and just hoping that in November when the final judgement is made, that justice will prevail.”

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“It’s no longer just about my own rights, it’s about our rights.”

Pascale du Toit-Henke (left) and her South African wife Jennifer du Toit-Henke (right) are suing the Namibian government for their constitutional right to live and work in Namibia, Pascale’s homeland. As told by Jennifer.

“I would say I’m an unlikely activist. I’d never considered myself to be someone on the forefront and pushing back on social issues. While I have always believed in righteousness, being an activist has never been central to my identity. Putting a legal challenge to the state and potentially launching ourselves into the spotlight on a very controversial issue…it’s very daunting.

Pascale and I didn’t even have the luxury to ready ourselves for this. We were pretty much forced to because the Ministry of Home Affairs wanted to kick me out of the country knowing that I wouldn’t be able to get back in. Back to my wife and our home.

It’s hard coming from a country like South Africa where we have wonderful LGBTQ rights. It was a shock for me. I didn’t realise that I’d never really felt discriminated against before, this felt like the first time I’ve really experienced homophobia. It’s not a good feeling. It makes you sad, angry, resentful. It chips away at you.

Mostly it’s the unspoken discrimination, the laws that have been put down by the Ministry of Home Affairs which has caused us an invisible distress. It’s made me feel very unwelcomed and embattled. It’s hard to shake off. The state-sanctioned homophobia has caused me to lose a lot. I’ve lost my right to work, to travel home or to continue my business. It’s so stressful and surreal.

Going to court feels a little bit confrontational and so, so unnecessary. And yet, so necessary. And so, it’s felt like I’ve been guided down this path to becoming an activist, or maybe initially forced down it. It’s no longer just about my own rights, it’s about our rights.”

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“What propels me to be at the forefront is that I know myself.”

Ndiilokelwa Nthengwe is an intersectional gender justice activist involved in advocacy and communications for several organisations including Equal Namibia. Their first book, The Chronicles of a Non-Binary Black Lesbian Namibian…in Love, is now available for pre-order.

“I’m trying to document and narrate what a nonbinary lesbian experience in Namibia could be. I’m doing this for myself, too. If I had the book I’ve written when I was in high school, I wonder how would it have shaped my own reflections of my identity. It would have confirmed for me all the thoughts I had and the internal conflict I felt. At that time, I didn’t have the language to articulate who I am: what I am for myself, to myself. And if media like it could exist, then it’s not just for me. It’s for the other many people who struggle to articulate exactly what they feel, to help them navigate how to exist.

This work documenting and archiving the struggle, like we in these social movements are doing by live-tweeting from the court rooms and doing Instagram live and radio interviews, is so important. We must do it for ourselves, we need to centre the voices of marginalised groups. It’s important because someone is always watching. Out of the 10,000 that are homophobic, maybe 300 appreciate the content you put out and they inform themselves on issues that affect their identities.

Being at the forefront is a privilege but it’s also humbling. It’s not about leading people, it’s about giving them the authority to become a part of the movement. It’s about showing up. What propels me to be at the forefront is that I know myself. I know my leadership qualities. When you say you’re going to do something, you must do it. You must be accountable to yourself. No one is going to do that for you just because you’re a lesbian or you’re gay. You must show that you’re not here to play. It means doing the internal work for yourself first.”

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“Nobody is voiceless. We all have voices. We just have to find ways to use those voices.”

Deyoncé Cleopatra Chaniqua Naris is a Namibian-born trans woman, blogger and podcast host. She is the executive director of the Transgender, Intersex and Androgynous Movement of Namibia (TIAMON) and the chairperson of the Southern African Trans Forum. She is affectionately known as “Mam D” to her “little Queers of the world”.

“Oh my goodness, Namibia is a beautiful country. It’s a warm country, the people are amazing. As queer people, we actually live relatively comfortable lives depending on where you find yourself on the socio-economic spectrum. I always say to comrades, in comparison to other countries in Africa, I believe as queer Namibians we are a lot better off and we should value that. But we also know that there is systematic exclusion and discrimination for our community here. Some of it is backed by individuals with personal prejudices that work at governmental institutions or who are custodians of our constitution. Therefore, our access to services like healthcare, judicial or just economic justice is generally a problem.

I’ve been an activist since I was a child, a mere little bambino. I can remember as early as my school days, I think I became the bully of the bullies, which is never a good thing. But, I’ve always stood up for the underdog, for what people would define as persons who are voiceless, but I mean, nobody is voiceless. We all have voices. We just have to find ways to use those voices.

But as a transwoman and activist in Namibia, my face is constantly out there. I find myself constantly navigating my own safety. Once your face is blasted all over, you never really feel safe because the level of transphobia and the abuse that you encounter which increases just a little. Its emotionally daunting living like this. It’s overwhelming to constantly prepare myself to leave the house because for the verbal abuse that I face, for the amount of taxis that will drive past me because I’m a transgender woman. They think it’s taboo or that it’s illegal for me to be me, they leave me by the roadside. It is hard but you manage to find ways to exist.”

 

Nigeria: The infamous 1996 Pfizer trial driving anti-vax feelings today

BY MAHDI GARBA & MODUPE ABIDAKUN

SEPTEMBER 10, 2021

For those affected by the devastating drug trial, vaccine hesitancy is not only driven by conspiracy theories or mistrust but lived experience.

Illustration by Antoine Bouraly

A version of this piece, edited by Mercy Abang, was originally published by Unbias The News. 

“It’s strange that I still remember everything, even the colour of the nurse’s uniform. There was a white nurse who was in a brown skirt and green blouse, who directed the Nigerian nurse to give him three injections at a time and he did exactly that while my son was on my shoulders,” says Hajiya Maryam*, speaking in Hausa. 

“Immediately after receiving the drugs, he became unconscious for hours. On waking up, I noticed that he couldn’t hear anything again. I knew that it was Pfizer who gave him the drugs.”

Maryam’s son, Zakari, was six at the time and ill with fever and headache. She had thought he had meningitis. She took him to Asibitin Zana, a clinic in Kano, where he was treated with drugs. The drugs, part of a Pfizer trial, left Zakari with a hearing and speech impediment. Maryam insists no one told her that Pfizer was testing out a new drug. 

The aftermath of Pfizer’s drug trial in 1996 is linked to the current COVID-19 vaccination boycott in communities within Kano State. Here, vaccine hesitancy is not only driven by conspiracy theories or mistrust in science but lived experience. 

Drug trials during an outbreak

In 1996, a severe meningitis outbreak spread through Nigeria, causing inflammation of the brain and spinal cord linings. By March of that year, the infection had spread to 12 states, leading to over 100,000 cases with a fatality rate of 10.7%. It was the most severe epidemic of the illness ever recorded in Nigeria. 

The outbreak, which lasted over three months, required the combined efforts of a National Task Force, the World Health Organisation (WHO), UNICEF, UN Development Programme (UNDP), Médecins Sans Frontières, the International Red Cross and several other NGOs to bring the epidemic under control, but not without scars left behind for families in Kano State. 

In addition to the international task force, the US-based pharmaceutical company Pfizer was in Kano at the time with an antibiotic drug called Trovan, expected to potentially treat meningitis, but not yet approved for that use or for treatment of children by the US Food and Drug Administration (FDA). The company administered a drug trial of Trovan and a second drug, Ceftriaxone, then a standard treatment for meningitis, to some 200 children.

Pfizer has maintained that they obtained prior verbal consent from all parents for the experiment, but those like Maryam and 29-year-old Bala Bello tell a different story. Bello was four-years-old during the meningitis outbreak. 

“I was ill and taken to the Infectious Diseases Hospital (IDH), popularly known as ‘Asibitin Zana’,” Bello recounted. “I was given some drugs, which no one explained to [my mum] what the said drugs were meant for.”

Shortly after the drugs had been administered, he developed an unexpected side effect.

“We didn’t even leave the hospital before a reaction manifested. Soon after, I developed paralysis in my legs,” Bello says while struggling to maintain a stable sitting position. “Soon after I was paralysed…my mother got to know that it was Pfizer who had given her the drugs from their experiment.”

Of the trial participants, 11 died and dozens of others were left with debilitating injuries: blindness, paralysis, deafness, and neurological deficits, which the company maintains are the result of meningitis, not the drugs they administered. (Pfizer did not respond to multiple requests for comment for this story.) 

In 1998, the license for Trovan for use by adults was withdrawn from the European Medical Agency because of concerns over serious medical problems and multiple deaths. It was withdrawn from the US market in 1999 for the same reasons, though at the time Pfizer said trials had revealed no side effects. It appears results from the trial in Kano State were never published.

In 2007, the Nigerian federal government and Kano State government filed criminal and civil suits against Pfizer and eight other defendants, asking for $7 billion in damages. The suit charged that the company had tested an unapproved and experimental drug on children with neither informed consent from parents nor approval from the Nigerian government. Pfizer countered that such approval wasn’t necessary. In 2001, an investigation by the Washington Post had uncovered that a document Pfizer claimed to prove ethical approval by Nigerian authorities for the trial appeared to be falsified and back-dated. 

In 2009, Pfizer and Kano State officials, along with representatives of the children’s families, agreed a confidential out-of-court settlement for $75 million. This conclusion led to compensation for some of the families affected, but Pfizer never admitted to wrongdoing and maintains to this day that the trial was proper and life-saving.

A legacy of scepticism

Many years later, the memory of the Trovan drug trial remains. The COVID-19 vaccine recalls doubts over the ethics of big pharmaceutical companies.

“I won’t advise, I won’t allow and I won’t tolerate seeing my son, myself or any of my relatives to receive the COVID-19 vaccine,” Maryam maintains. She vows to discourage anyone she knows from taking the vaccine and inform them about the 1996 meningitis outbreak. “I will educate them on that. My son is now living in agony despite the so-called compensation…He is neither in school nor into business. He is living a miserable life.”

Maryam is not alone in her doubts. From Congo to Malawi and South Sudan, doses of the expired vaccines have been destroyed, a development that raises concerns for vaccine equity and the effectiveness of a global vaccination effort that requires mass participation to be effective.

Dr Samaila Suleiman, a lecturer of History at the Bayero University Kano, argues that scepticism over the COVID-19 vaccine can be traced to historical cynicism against the motives of Western powers in Africa. 

“It is important to also note that the COVID-19 vaccine scepticism is not peculiar to the uninformed members of the community. There are highly placed members of the elite and political class who have refused the COVID-19 vaccine, citing a Western conspiracy to decimate the African population,” he says. 

Fighting hesitancy

“As public health experts, we must do more than offer the vaccine,” says  Dr Faisal Shuaib, head of the Nigerian National Primary Healthcare Development Agency. “We have to also put in the hard work of providing the correct information about the safety, effectiveness of vaccines and clear the doubts and misconceptions that exist.”  

These doubts may be difficult to disprove when pharmaceutical companies remain unrepentant for previous actions, settling disputes with out-of-court payments cloaked in secrecy. However, countries can take measures to hold them to account. In Uganda, the high court recently set out guidelines for obtaining informed consent from the subjects of human clinical drug trials in the case of Mukoda v International AIDS Vaccine Initiative. 

For Bello and Maryam, intense scepticism about the COVID-19 vaccine and the pharmaceutical industry in general remain. “I won’t take COVID-19 vaccine from Pfizer or a different pharmaceutical company,” Bello reiterates. 

As health advocates struggle to fight disinformation and conspiracy theories about the COVID-19 vaccines, it is important to remember that in some countries distrust stems not only from ignorance but experience. 

 

Unbias The News is a feminist, all-women crossborder newsroom by Hostwriter, seeking to actively fight against the perpetuation of racist, sexist, or ableist stereotypes. 

CRIMINAL CAPITALI$M 

Elizabeth Holmes: Has the Theranos scandal changed Silicon Valley?

By James Clayton

BBC
North America technology reporter



For years Elizabeth Holmes was the darling of Silicon Valley, a woman that could do no wrong.


The start-up she founded, Theranos, attracted hundreds of millions of dollars in investments.


Yet the company she had built was based on fantasy science.


The technology Theranos was producing - supposedly testing for hundreds of diseases with a pin prick of blood - seemed incredible. And it was.


Millions of dollars were squandered and some who used the company's tests, including a cancer patient, say they were misdiagnosed.

Theranos founder 'lied and cheated', trial hears


Now, years after Theranos collapsed, Ms Holmes is on trial in California for fraud (she has pleaded not guilty).



For an outsider to Silicon Valley the story sounds nonsensical. How were so many people taken in?


Yet in Silicon Valley, many believe that Theranos - far from being an aberration - speaks of systemic problems with start-up culture.

Faking it until you make it


In Silicon Valley, hyping up your product - over-promising - isn't unusual, and Ms Holmes was clearly very good at it.


A Stanford University drop-out, she was, by all accounts articulate, confident and good at presenting a vision - a mission as she described it - to revolutionise diagnostics.

Sceptical experts told her that her idea was just that - an idea - and wouldn't work.

But she projected an unfaltering confidence that the technology would change the world.


PROFILE - Who is Elizabeth Holmes?


"It's baked in to the culture" said Margaret O'Mara, author of The Code: Silicon Valley and the Remaking of America.


"If you are a young start-up in development - with a barely existent product - a certain amount of swagger and hustle is expected and encouraged" she said.


Particularly at an early stage, when a start-up is in its infancy, investors are often looking at people and ideas rather than substantive technology anyway. General wisdom holds that the technology will come with the right concept - and the right people to make it work.


Ms Holmes was brilliant at selling that dream, exercising a very Silicon Valley practice: 'fake it until you make it'.


Her problem was she couldn't make it work. Her lawyers have argued that Ms Holmes was merely a businesswoman who failed, but was not a fraudster.


The problem in Silicon Valley is that the line between fraud and merely playing into the faking it culture is very thin.

"Theranos was an early warning of a cultural shift in Silicon Valley that has allowed promoters and scoundrels to prosper," said tech venture capitalist Roger McNamee, who is critical of big tech and did not invest in Theranos.


He believes that a culture of secrets and lies in Silicon Valley, a culture that allowed Theranos' tech to go un-analysed, is "absolutely endemic".


Ambition can be good. Promising a brighter future, and then trying to realise that vision, brought about computers and smartphones.


But for investors, trying to separate the charlatans from the revolutionaries is a constantly evolving challenge.


Last month, Silicon Valley phone app start-up HeadSpin's CEO and founder, Manish Lachwani, was arrested for allegedly defrauding investors. For people putting money on the line, there are great fortunes to be made and lost.

Silicon Valley

Keeping the 'secret sauce' secret


In Silicon Valley intellectual property is closely guarded. The 'coke' recipe, the secret sauce, is often the thing that gives a company value, and new technology firms are particularly sensitive to having their ideas copied or stolen.


Secrecy is important for these companies to succeed - but that culture of secrecy can also be used as a smoke screen, particularly when even employees and investors don't understand or aren't given access to the technology itself.


This is what happened at Theranos. Journalists, investors, politicians, you name it, were all told the science was there. Yet when questions were asked they were told the technology was so secret that it could not be fully explained, analysed or tested.


Walgreens, a major client of Theranos, became exasperated with the lack of information given by the company about how the system worked.


There are many Silicon Valley companies I've reported on that will not fully explain how their tech actually works. They claim to have "proprietary" systems that cannot yet be revealed or peer-reviewed.


The system is based on trust, yet it is fundamentally at odds with a culture of "faking it" and creates the perfect environment for Thernanos-type scandals, where claims that aren't true are left unchallenged.

Borrowing from the CIA playbook


A system that places so much emphasis on secrecy needs lawyers, and lots of them. Companies don't want their employees running off with ideas. Non-disclosure agreements (NDAs) are endemic in the start-up world - and by no means confined to tech.


But Silicon Valley's culture of secrecy makes it notably difficult for whistle-blowers.


After the company's collapse, former Theranos employees spoke of intense pressure to withdraw negative public remarks or stay quiet altogether. The company hired aggressive, expensive and very active lawyers to protect Theranos's reputation.


This is not uncommon in Silicon Valley, says Cori Crider from Foxglove, a group that helps whistle-blowers come forward.


"I spent more than a decade working in national security and I very often feel like Silicon Valley types play from the playbook of the CIA on this stuff", she said.


"They have managed to scare people and make them think they don't have the right to raise legitimate issues."


If founders and chief executives aren't being honest, employees need to feel comfortable raising the alarm. All too often they don't.

Rupert Murdoch invested in Theranos

A wild west of money and ambition

Amid the hype, it can be easy to forget that many investors looked at Theranos and passed - especially those with a knowledge of healthcare.


Among those who were notable investors were people and groups without expertise in health, such as the media mogul Rupert Murdoch.


For these investors with capital, often their decision to put in a stake assumes that smaller early stage funders have done their homework on the tech.


"They're kind of taking third party validation at its word," said Ms O'Mara.


Once again, it's a system based on trust - later investors trusting that earlier ones know what they're doing. The problem here is, with so much money sloshing around, that is not a given.


In the end, Theranos got caught. As a health technology company doing real life diagnostics, results and regulators would eventually prove it real or fake.


But with many Silicon Valley companies selling the supposedly new and the cutting edge in fields far less tightly regulated, scrutiny is more lax.


Today, the 'fake it until you make it' culture is still alive and well - as is the repressive culture of secrecy and the aggressive use of NDAs for employees. It's a model that has its advantages - and helps churn out extremely valuable and sometimes innovative companies.


But it also means the ingredients are still in place for another Theranos scandal.